Changing a Narrative through Film – Jennifer Brea’s "Unrest"
KATYA LAVINE
When Jennifer Brea began her PhD at Harvard, illness was the last thing on her mind. She was a Princeton graduate, had recently married her husband, and planned to become a social scientist. One day, she came down with a 104 degree fever and assumed – like any other illness she’d had – it would pass with time and rest. But it didn’t.
Brea spent the next eight years predominantly in bed. She had crippling fatigue, headaches, light and sound sensitivity, and severe pain. Hundreds of tests came back normal, and her doctors tried to convince her it was psychological.
In a TED Talk Brea gave in 2016, she describes:
“My neurologist diagnosed me with conversion disorder. He told me that everything -- the fevers, the sore throats, the sinus infection, all of the gastrointestinal, neurological and cardiac symptoms -- were being caused by some distant emotional trauma that I could not remember.”
It took many more months for Brea to receive her actual diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). ME/CFS has historically carried a hefty stigma in the medical community, only recently gaining credibility as more research points to clear, systemic biomarkers of the disease. It was not until 2015 that the Institute of Medicine acknowledged ME/CFS as “a serious, chronic, and systemic disease that frequently and dramatically limits the activities of affected patients.”
“‘Have you seen Unrest?’ became a question I asked almost every patient I saw. For those who had seen the film, many opened up to me about its impact on their experience as a patient.”
Using her iPhone, mostly from bed, Brea began to film her experience. She filmed doctor’s appointments, emergency room visits, painful moments she spent alone. She filmed difficult conversations with her husband, and eventually, video and phone calls with other ME/CFS patients around the world. Years of filming and editing culminated in Unrest, a documentary that went on to win at Sundance and earn a spot on the Academy Award shortlist for documentaries.
Before I began working at Stanford’s ME/CFS Initiative in 2017, I did not understand how many patients shared Brea’s story, and how urgently this community needed support. “Have you seen Unrest?” became a question I asked almost every patient I saw. For those who had seen the film, many opened up to me about its impact on their experience as a patient. One young woman’s story stands out. Her onset was similar to Brea’s – an acute viral infection kept her out of school for a while, and ultimately she withdrew permanently. Her parents sent her to an inpatient psychiatric program where she received electric shock therapy. With doctors convinced her symptoms were psychosomatic, her parents struggled to believe in her illness until they saw Unrest. Her mother cried as she recounted the experience to me. Once they found the right specialists, she began to have some improvement.
I heard a similar story again and again. Patients with ME/CFS had to battle doctors and their families to be taken seriously. Not only did Unrest give them validation, but it gave them a community, a set of resources. Brea had become the voice that so many patients waited for. And she did this primarily by turning on her iPhone camera, letting people into her experience through film.
“As an ME/CFS researcher and now medical student, Unrest gave me something that I cannot get in a textbook or article or fifteen-minute appointment: a story of illness shared through the lens of the person who is most apt to share it”
Unrest didn’t just reach our patients at Stanford, but a global community. The film has been viewed over one million times on Netflix, in 22 countries, and has been screened across college campuses, medical schools, and hospitals. Medical practitioners can receive Continuing Medical Education credits for viewing the film. As an ME/CFS researcher and now medical student, Unrest gave me something that I cannot get in a textbook or article or fifteen-minute appointment: a story of illness shared through the lens of the person who is most apt to share it – a story that does not just explain symptoms, but shows in vivid scenes the toll an illness takes on a family, on school and home life, and on a patient’s will to keep going. Unrest is a powerful example of the way film and medicine can work hand-in-hand. In her willingness to record and share her most vulnerable moments, Brea demonstrated the power of film to shift the narrative of a disease.
Katya Lavine (@katyalavine) is a medical student at the Warren Alpert Medical School of Brown University, where she's pursuing a joint MD-MSc in Population Medicine. Before embarking on her journey to medical school, she studied English and creative writing at UCLA. Her poetry has been published in the Journal of War, Literature, and the Arts, and Intima: a Journal of Narrative Medicine. She is passionate about medical humanities, primary care, women's health, and combating stigma in the care and treatment of chronic pain.